nonBlog: December 2006
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They Shoot Horses, Don't They?-Sunday, December 31, 2006
It seems like every day I have a new, appalling sentence to say that I never imagined was possible. Today it's this: my sisters and I have convinced our father to cancel his amputation.
No one can say what is right in a situation like my father's. I've never heard a story like his and neither have his doctors. But I do know one thing with perfect certainty: my father simply cannot endure more painful surgery that gains him nothing. He has had more of those than I can count, literally. Two dozen? Thirty? He has been having surgeries since I was 13 years old and every single one has left him less well off than he was before.
I know exactly what will happen if they amputate his left leg-the source of the MRSA staph infection that is killing him. He will have two planned operations to cut off the leg. That's a given. Then there will be a third revision surgery to correct excessive bone growth at the site of his stump, because whatever can go wrong with one of my father's procedures inevitably does. Then the doctors will tell us that the staph also needs to be physically removed from the prosthetic knee in his right leg, which is how this odyssey with the left leg began. And if the right leg follows the progression of the left, there will be two or three procedures before they conclude they have to amputate it as well. There will be two or three operations to accomplish the amputation, and finally my father will have had eight more surgeries that will buy him five or ten bedridden years spent in a nursing home. For what purpose?
I told my father that I adore him-and I do-but that I thought he made the right decision a month ago when he elected hospice. The life he would have after all these sugeries would be even more of a prison sentence than the one he lives now. And the reason this amputation option re-opened is that, having made the decision to die, my father didn't die quickly enough. He was hoping that if he agreed to the amputation he would die on the table. And if that's the best option my father can get in this country-to go under the knife hoping his doctors will accidentally kill him-then we have to come up with something more humane. We spare animals this agony, don't we?
Emergency Exigency-Thursday, December 28, 2006
My father is scheduled to have his left leg amputated on January 4th. He's so inexplicably strong after having been taken off IV antibiotics for his deadly MRSA staph and being sent home to die that the doctors have decided they can save his life after all. Next I expect to read in the papers that George W. Bush has become a Democrat.
I won't be there when they remove his leg. I have his so-called coordinating physician to thank for that. This guy's prognoses had me on a plane within hours in July and December to say good-bye when, as it turns out, my father was having a medical crisis but was not in fact near death. And the thing about being told you're in a state of emergency every day for months is that when a true emergency happens-when a doctor is about to take off your father's leg, for example-you can't just jump on a plane again.
But, as my sister Sandy said today, when your parents are as needy as ours and for as many years, you respond so often that you end up not being there when it's genuinely important. And this is why the observers in our parents' lives seem to think we are not good daughters. What they don't know is that we've been our parents' caretakers since we were children. We never really progressed to the point where our parents agreed our focus should shift away from the family we came from to the families we created ourselves.
Niagara Fall-Wednesday, December 27, 2006
My husband Tom sometimes says that an experience is "like being rolled around in a barrel." You never know where you'll end up when they open the lid. He uses that phrase when he's in emotional distress, and of course I've always understood what he meant by it, but I never related to it on a visceral level until now. Preparing yourself over and over for someone to die and then watching them rally is like being rolled around in a barrel.
I said a final good-bye to my father in July, in December, and once or twice in between. I went through every grieving emotion from A to Z each time as I prepared to lose him. I made peace with the fact that he was finally going to be free from the physical pain that has defined his life and his choices beginning when I was about 13 years old. My sisters and I started planning the trip we will take to scatter his ashes in Boca Grande, the Florida town where he lived from the late eighties until two years ago when he broke his ankle and landed permanently in a wheelchair.
Every morning I wake up in a state. Is my father dying today, or is he surviving? And if he's surviving, is that good or bad? Should I stay in San Francisco this week, or should I fly down to Florida and say a final good-bye to him-again? I make my decisions for the day and then get out of bed to act on them. Today my father still qualifies as a hospice patient with a limited amount of time to live, but at the same time he might be strong enough for the amputations that could save his life. In the next week doctors will evaluate his Lazarus act and decide how meaningful his apparent recovery is. Then they'll seal me up in the barrel, roll me around again, and open it up. I'll blink at the light in my face and wait for everything to come back into focus so I can find out where I am.
Steven Comes Alive-Tuesday, December 26, 2006
It is Boxing Day, which is a British holiday that has something to do with giving boxes to the servants. But for me it has to do with gloves and wanting to throw a punch at somebody. Most anyone would do.
It turns out that my father has been non compos mentis for much of the last three weeks not because he is septic and dying, but because he has been heavily medicated. Now that he's a hospice patient in his home rather than a hospice patient at the hospital, his prescriptions are not always adequate to control his pain. This means he keeps having "breakthrough pain" and requires extra doses that his doctors haven't prescribed for him. While he's waiting for them he is suddenly lucid-so with-it and so much his old self that for the last couple of days he's actually been a bit nasty to my sister Sharon. Being a bit nasty to Sharon is something my father does when he's well.
Off his meds, my father is actually so ruddy and coherent that he seems to be getting better, which is medically impossible. Otherwise-healthy 30-year-old men are felled by MRSA staph in two weeks. My father has had it since the summer and is not taking any antibiotics, yet his head-sized knee seems to be draining on its own and he is eating and complaining like no hospice patient we've ever heard of. So today the hospice service is sending someone to evaluate him and determine if he's still dying. If he isn't this would mean we're back to considering an amputation, perhaps two, then months of therapy, and then-what? My father is a quadraplegic in terrible pain who wants to die, so he would then be a quadriplegic with no legs in terrible pain who wants to die. My sisters and I have gone from mourning his imminent demise to asking each other what would be worse: if our father dies, or if he doesn't?
Happy Birthday Minus You-Friday, December 22, 2006
Today is Ava's second birthday and Monday was Olivia's twelfth. Both mornings I woke up and took a shower. I got dressed and took Ava out of her crib. I changed her diaper and gave her a cup of whole milk. All of this without the traditional early-morning phone call from my dad.
I am becoming more aware of my father's predilections in their absence. He always wanted to be the first person to call on a birthday morning. When I was single or before I had children, this meant that his call woke me up on a day I would have preferred to sleep late and his voice was the first one I heard. Now that I have three daughters I'm always up before that ring, but it would come before everyone else awakened and, depending on the season, often while it was still dark out.
I hate a lot of things about the fact that my father is dying-I hate them with a fury I didn't know I had-but the thing I hate the most is the fact that he's here but not here. He's still alive, lying on an air mattress in his apartment in Florida, but he's also already gone. He doesn't know it's December 22 and even if someone told him he wouldn't remember that December 22 is Ava's birthday. And even if someone told him that it's Ava's birthday he wouldn't remember who Ava is. What's more, after he's truly gone, both body and soul, Ava won't remember her grandfather and that's the part I'm going to hate most for the rest of my life.
Unmoored-Thursday, December 21, 2006
My father was kicked out of hospice the other day. He was sent home against his wishes because the people at the hospice unit of the hospital had accomplished their goal of controlling his pain and making him comfortable. Once you're comfortable you have to go home to die. Or to a standalone hospice center or nursing home. And if there's one thing my sisters and I know, it's that my father never wants to see the inside of a nursing home again after a miserable experiment two years ago. The fact that he was losing his ability to live at home was one of the main factors in his decision to die.
So he was forced to leave hospice, and my sister Sharon was so upset for him that she couldn't bear to watch. She left the transition in the hands of the Vitas professionals who do this every day. But it went off surprisingly smoothly because this week my father thinks he's on a cruise ship. I should mention that this is the height of irony because he has never spent a minute of his life on one and wouldn't want to. We are a family of sailors, not cruisers. My grandfather used to call motorboats of any description "stinkpots" and my father shared his views. Nonetheless, when my dad saw the inside of his apartment he said, "Hey, now I have a bigger room on the cruise ship!"
He seemed positively cheerful until Sharon arrived. He doesn't recognize her, but when he sees her his mood drops as it registers somewhere in his brain that something is not right. So she has decided not to disturb his reality, which the Vitas workers say is a way for him to disconnect from the world of friends and family he doesn't want to leave. He's entitled to a couple of peaceful days, cruising away from us.
An Everlasting Love-Monday, December 18, 2006
It's no longer safe for me to be with people who don't make me feel safe. I found this out yesterday when we attended a Christmas party given by very close friends. I was thinking I didn't want to go because, with my father close to death, I don't feel like doing a lot of things I normally feel like doing. But even though there would be a lot of strangers in attendance, I could picture spending a few minutes here and there talking to my very close friend, and that was such a cheering thought that it powered me right through the shower-makeup-clothes-kids-baby-diaperbag-housegift-roadtrip drama necessary to achieve that vision.
And what do you know, my voice broke when she asked me how it was going. But it was okay because I was safe. She looked at me with that don't-sweat-it look of hers and I hung out with her hubby and her friends and our collective kids and drank pomegranate champagne cocktails. And when we were driving across the Bay Bridge on our way home and I heard a song from the first record I ever bought with my own money, I cried for all I was worth. When I bought that album (I'm ashamed to tell you it was Andy Gibb), my father was an able-bodied man who had undergone one operation for a back problem. He had no idea that he would go on to cripple himself with more than two dozen aggressive and misguided surgeries, ending one day with a deadly infection that could only be cured by amputations he couldn't survive and with his daughter weeping on the Bay Bridge. And I wondered, if he knew then what I know now, would I still be crying to Andy Gibb?
Mommie Dearest-Friday, December 15, 2006
The fact that my father is dying makes me think more often of my mother, even though she is as absent and malignant as ever. She and I are estranged. It doesn't take much to be estranged from my mother; all you have to do is stop dancing to her tune and suddenly you're "not speaking." We have been not speaking more or less since my six-year-old was a baby. And yet when my father signed the hospice papers I wondered for a day or two if each phone call might be from her. "I'm so sorry this is happening," I imagined her saying. "I wanted you to know I'm thinking of you."
But my mother would never do anything like that. Yesterday my friend Dar expressed amazement that my mother hasn't called my father-her ex-husband and the father of her three children-to tell him she wishes this weren't happening to him. This expression of amazement is from the daughter of Holocaust survivors who barely functioned as parents, so that's about as minimal a baseline for parenting as you can get. My mother, who was raised in middle class comfort on Long Island, doesn't even qualify by Dar's low standard.
Instead, she's angry that my father is getting all this attention from my sisters and me. She's angry that we feel we have to fly down to Florida to say good-bye to him. She's angry that his death is interfering with her Christmas parties. At the same time, she wants to know if she's in his will. She's not; although I'm surprised my father's will doesn't provide for a couple of henchman to fly up north to beat the crap out of her.
Tested-Thursday, December 14, 2006
I had to be tested for hepatitis C today because-big surprise-my father was just diagnosed with it. Apparently he contracted it from a blood transfusion in the hospital some time in the last two months. Everyone who has had bodily contact with him has to be tested, which includes my two sisters and me. My bodily contact is that when I lean over to kiss my father, he always turns his head so that the kiss lands on his mouth. Until now I never minded it. Your children's lips are such poofy, soft things and wonderful to kiss; I always figured my dad never stopped feeling that way.
I'm not really worried about having hepatitis C; if I tested positive that would be extremely unusual. But if my father were not drifting in and out of consciousness he would identify this development as yet more proof of Losee's Law (see below). I would have to agree with him. He's a quadriplegic who is dying at 68 of MRSA staph, which is a so-called superbug. Couldn't The Force have cut him just the tiniest bit of slack and given hep C to somebody else?
When I asked the doctor how my father managed to get hepatitis C he told me that the disease wouldn't be a factor in his death because hep C takes too long to damage your health. Which didn't answer my question, but that's not unusual because my father's doctor is so unresponsive to our questions and so oblivious to people's social cues that I nicknamed him Dr. Aspberger. Today Dr. Aspberger changed his tune about kicking my father out of hospice because he says that Dad is weakening too quickly. But I highly doubt it. My father is never that lucky.
Can I Have Some Change?-Wednesday, December 13, 2006
My father has always said that when it comes to his health, he is spared nothing. He called it Losee's Law-if somebody is going to get something, it will be him-and it used to bug the crap out of me every time he said it. But now even I feel my life is governed by Losee's Law. At a time when he has decided to choose a good death, just when he needs to be spared further agony and suffering, the hospice unit where he has been dying comfortably is kicking him out.
Bizarrely, it's because he's doing too well. Who wants to do well when they've decided to stop fighting? Contrary to common sense and his doctor's expectations, he is sometimes fully coherent. He called me "Da" both yesterday and this morning. I thought I had said a final good-bye to the man who was my father on Sunday, but now he has risen again and he's still there, waiting for me to come back. Olivia's 12 th birthday is on Monday; Ava's is next Friday; Christmas is three days later. The book Helaine and I are writing is due the first week in January. I am as overwhelmed with the daily details of life as I ever am, and as unable to shuck them off, yet I need to buy another plane ticket.
Along with my dad, Murphy's Law is also alive and kicking, which means that the moment I accept that I will spend Olivia's birthday or Christmas at my father's bedside, he will withdraw completely into confusion and have no idea it's me. I know this because yesterday morning he thought he was in a bank and that my sister Sharon worked there. When the nurse told him Sharon was his daughter, he said, "That's not my daughter." Then he looked at her shining face and said, "But I wish she were my daughter." If I miss Olivia's birthday to fly back down and my father thinks I'm a bank teller, have I done the right thing?
My Father's Protector's Keeper-Monday, December 11, 2006
On one of the days I was with my father last week when he was still lucid, he was crying. My father has wanted to die for a very long time-a decade at least-but I guess now that he is in hospice and is no longer receiving curative treatments, the reality that he wasn't going to be my dad anymore was sinking in. So he said, "When you go back home, take Yahweh with you." Then I started crying.
Yahweh is my father's anti-Episcopalian term for God. He was never much for religion, which is perhaps the source of some of my own disdain for it. But he did believe that there was some communication with a Higher Thing to be had, that the thing was Yahweh, and that the family communicator had to be our oldest member. That was Dad. So once in a while, when things here on Earth were far too extreme for wishes and prayers, Dad would offer to speak to Yahweh. We actually took this very seriously. You would ask Yahweh to save your child's life when her fever hit 106. You would never ask Yahweh to make sure you got that promotion at work.
Every single time Dad has contacted Yahweh since I became an adult, Yahweh has come through. Now I am going to be the keeper of Yahweh. At 41. Somehow that doesn't feel right; the keeper of Yahweh has to be a senior citizen at the least. But a week ago, when Sharon went to church (at least one of us has managed not to be godless), the pastor made mention of Yahweh and Sharon was so taken aback she almost made a noise. You don't often hear the name Yahweh, which is what makes it such a Dad thing. But Sharon took it as a sign of something. I am thinking it's a sign that I don't have to carry Yahweh all by myself. There are three of us, Dad's daughters, and together we're an imposing 119.
Even More Terminal-Sunday, December 10, 2006
Today I said good-bye to my father for what is almost certainly the last time, ever. After a week here I'm flying back home tonight. The time I spent with him today was nothing at all like my idea of how I'd want to spend my last hours with anyone. He was blank and confused, and he kept falling asleep with his eyes open as if he were already dead. I wasn't convinced he even knew my name, but I couldn't bear to find out so I didn't ask. As far back as I can remember, he has used my name several times in any given conversation, sort of like an actor in a play. "What's the matter, Dumps? You sound a little down," he used to say. Dumps is short for Dumpling. Or, "Da Bear, what have you got on this week?" My sisters named me Da when they couldn't pronounce Stephanie. I kept waiting to hear Dumps or Da one more time, but he didn't say either. Thankfully, he'd called me Dumps once the night before.
He has something called Terminal Anxiety. He thinks he needs to get out of bed even though he can't stand. He thinks he needs to make decisions, sign papers, make phone calls. We tell him he has nothing to worry about, that everything is done, that he doesn't have to get up for anything, not even a bowel movement. He stares back at us, uncomprehending. Terminal Anxiety is a sign that a person is declining quickly.
My two sisters and I decided that the reason we can't seem to speak for hours after spending time at Dad's bedside is that watching him die is literally unspeakable. Now that I'm going back home, it would be comforting to think of him fading away in a peaceful state. But if Terminal Anxiety means that his terrible ordeal will be over in two more weeks instead of two more months, I welcome it.
Shaken and Stirred-Friday, December 8, 2006
My father's roommate died yesterday. I came in to find Bed B empty. In hospice that can only mean one thing. Since my father is not cognizant of everything around him, he didn't notice the drama on the other side of the curtain. I came in and said, "When did that other guy die?" And my dad said, "He died?" He seemed distressed for a moment, but then he realized that he'd never have to listen to the voice of the man's wife again and that cheered him up. She spoke with alarming volume in a strong New York accent that drove my father to distraction. He is from former moneyed folk on Long Island who look down their noses at that form of speech, even though I hear the odd inflection in all of us from time to time.
It wasn't much of a visit today. My father slept most of the time Sharon and I were there. Finally we gave up, since our third sister is flying in tonight and we'll be back to see my father again later. Sharon and I find that after we see him we are flattened for hours afterward. We literally cannot make sentences. I have several friends-lovely friends, attentive friends-calling me on my cell, but I don't want to speak to them. I don't even want to talk to Tom. I just fold into myself. After a while Sharon looks helplessly around her kitchen and asks me what I need. She starts with a bottle of water or a soda and when I reject those she moves from there to Oreos, cheese, a beer? I say no a few more times. Last night she ventured, a Piña Colada? And I sort of nodded. She put out some guacamole and chips and whipped up a professional Piña Colada complete with paper umbrella and we sat sipping them together in silence, remembering almost reluctantly that in spite of what we have seen, the two of us are still alive.
A Picture of Health-Thursday, December 7, 2006
Last night Sharon got a call from one of our Losee cousins in North Carolina. We both thought it felt strange to see the number pop up; my father and his brother have never been close and so our cousins have always felt like a distant entity, even when they lived in the same town on Long Island. "But I don't know why this feels weird-they should be calling now, right? This is the right time to call," Sharon said. Then she picked up the message and it said that the photo my dad had asked for would arrive the next day by Fedex. The photo is of our cousin Geoff in his dress blues from the military. I felt my chest tighten.
Geoff is the son my father never had. My dad didn't much care for his role as the father of three girls. He adored Geoff-his brother's oldest son-all the more because Geoff went to Annapolis and got to have the life my father put aside when he met my mother and went into the family business of advertising sales so he could better support our family. He always said that leaving the military was his greatest regret.
My father is spending longer chunks of the day sleeping now. Sharon and I are supposed to be gloved and gowned to protect ourselves from his rampant staph, but it feels silly to put on all this garb while he dozes. I keep wondering, when did he ask Geoff to send him that picture? But my father is who he is, and one day soon we'll be saying he was who he was. This is the dad I am watching as he sleeps, and that is the dad I'll have to mourn later. That dad doesn't ask for a picture of all his six grandchildren. That dad asks for a picture of my cousin Geoff, festooned with medals.
Shot in the Heart-Tuesday, December 5
As I write this I'm sitting by my father's bed in Fort Lauderdale, watching him die. He signed the hospice papers yesterday and the process moved as fast as a train. They pulled out his IV and moved him to a different wing of the hospital. He can have all the painkillers he likes; my sister and I can bring him a salt bagel from H&H and vodka and a hot dog with sauerkraut and onions and any flavor of ice cream he can think of. He's like a killer on death row, ordering his last meal.
The nurses keep mentioning how handsome he is. I guess he doesn't look like the average hospice patient. But then he never looked like a normal person-neither did my mother when I was growing up. I know I'm perfectly attractive, but my looks are nothing like those of my parents. They always looked like movie stars. As Dad's aide Brenda said today, "He looks like someone famous whose name you just can't remember."
My father tried to think of something I should remember to say to Olivia for him on her wedding day, but he couldn't come up with anything. I kept wanting to ask him to watch over my children when he gets to the other side, but I didn't have the heart. It's the only thing I can think of that frightens me to my core, the possibility of one of my girls dying before me. Instead, whenever he came to after drifting out of consciousness, his first thought was to talk again about which of my male cousins should get which of his guns.
Ask Yourself-Friday, December 1, 2006
As of this morning I understand that from now on my father is in one of two states: about to die or not quite about to die. He'll never thrive again; he'll never go home. He won't even make it to an assisted-care living facility.
In the hospital a couple of days ago he couldn't follow the doctor's finger with his eyes and he didn't know who the president was, not even when the doctor tried to prompt him by adding that it's the guy we all want to get rid of. (That was the only heartening bit of information in the mix that day; this is a Florida doctor we're talking about.) Today my father is making the decision whether to have his left leg amputated or to sign the papers to become a hospice patient and halt his IV antibiotics and let himself decline into confusion and then death from sepsis. If he chooses the latter he'll only have a few lucid days left in which to say good-bye. My finger is poised above the Continue button on a JetBlue itinerary to Fort Lauderdale, waiting to find out whether to click.
I try not to live my life exclusively as a reaction against my mother's and father's poor example, but it's hard not to look at my dad's 68 years as an example of what not to do. I talk to him several times a week and visit him a few times a year in spite of the kind of dad he was to me growing up, not because of it. But I always appreciated the fact that he would try to answer any question I asked him, particularly in his later years. I am full of questions and always scratching about for information, and the thing I'm most afraid of is what it's going to feel like not to have a Losee who out-ranks me to ask anymore.